Please help- need feedback on IPi OR BRAF treatment

Posted By
9/9/2010 7:53pm
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Replies: 8

Hi Everyone

 

I just had my MRI brain scan & PET/CT scans. I consider the results to be very good. No organ involvement, no brain mets.....Just still have 2 node: .4mm &.6mm in my left thigh.

My primary was in my foot 2005, 1st intransit in thigh removed 9/2009, 2nd intransit in thigh removed 5/2010.

I am considering Rouche BRAF. I am  Not happy about Braf because the response might not be long term & might have to continue to take the pill ongoing with no end point. Also, considering IPI.  IPI scares me because of the potential severe long term effect, but at least there is an end point to the treatment.

Last but not least, I can watch & wait, but that will not cure my cancer, Stage 3c

My preferance would be to do IPI but reading all the post regarding the side effects for IPI scare me. I am very active person & I am afraid my tumors might spread or grow before IPI kicks in (I onlyhave a  .4 &.6mm in left thigh, afraid IPI will spread tumors to organs) or that I might get one of severe side effects.

Has anyone done IPI with minimum side effects?????Need some words of encouragement. Anyone having long term response with Braf??

I need to decide to do "systemic treatment or "wait & watch". I would sincerely appreciate any opinions or feedback, recommendations.

Thank you for taking the time to read my post and replying.

 

Did you consider PL-1?  I hear that it has fewer side effects than ipi, and initial results are promising for a durable response.  See the post below on new information posted on the MERF website.  There are very good results posted from the small trial: Anti-PD1 antibody.  This is a quote from the article which is worth reading in its entirety:

PD1 is another T cell-inhibitory molecule. Antibody to PD1 was administered to 38 melanoma patients. 18 of the patients had objective clinical responses. This trial was presented by M. Sznol at the Yale Cancer Center, New Haven.

I am not an expert but I try to stay up with as much information as possible. You might check the Biovex page. They are in Phase 3 Clinical trial. It looks VERY PROMISING.

I am in a trial at MD Anderson with Ipi and Temador in combination, as are at least two others who post on this board.  I have done 2 three week cycles and are scheduled for my 3rd Ipi infustion next Tuesday.  I take Temador for 4 days at the beginning of each cycle.  There are others who have taken Ipi in earlier trials as well as a number who are now in the "Compassionate Use" trial.  You should get more responses here, and will find prople report a range of side effects that can vary over time as well. 

In my case, I have had minimal side effects so far from the combination, so the Ipi part has been no problem up to this point.  Slight rash, some itching, and occasional headaches are what I have had so far.   I have noticed some who post here and elsewhere that say that side effects worsened for them in cycle 3 and 4, so that is something to consider.  My Doctor' experience at MDA has been that side effects of Ipi are generally manageble, but there is variation in number and severity of side effects.  In short, you won't know until you try. 

Since you are asking for feedback, here goes.  I would say doing nothing is not the best option.  I tested negative for the BRAF mutation, but if I did have it, I would absolutely do the Roche Trial.  One other approach would be to do the Oncovex Trial for surface lesions (if that is what you have?).  It may be best to try on of these first before doing Ipi, and currently you must have actually not responded to at least one other treatment in order to be eligible to get Ipi.  Even after Ipi is approved later this year (as many expect, see:  http://www.medscape.com/viewarticle/727137    ), it apparently is being considered a "second line" treatment, meaning (again) that patients must have not responded to at least one other treatment to receive it.  In any event, it should be more widely available in the future.

So consider trying the BRAF Trial first, if you are eligible.  You will have to research side effects, but my recollection is that they are relatively mild and manageable, though other who are doing one of the BRAF Inhibitors could tell you about their own experiences.  Individual anecdotes will take you only so far in making a decision, and aggregated data does not tell you where you will fall on spectrum of potential side effects.  Anyway, look here for more information here on the Roche Trial:

http://clinicaltrials.gov/ct2/show/NCT01143753?term=braf%2C+roche&recr=Open&rank=1

The take from the research so far on the BRAF inhibitor(s) is that they show significant results relatively quickly in a large proportion of patients (50% plus), but there are questions about the durability of the responses. 

So try the BRAF and if that does not work, or stops working, then try the Ipi.  Sound reasonable?  Best wishes to you - whatever you decide - it is your life and nobody can tell you what to do or what is right or wrong.  Do you homework, give yourself time to think, ask questions, then go with a (strong) gut feel.  Having confidence in your Doc(s) and where they practice is very important too.  Hope that helps a little.

Best Wishes,

Jim

 

 

 

 

 

I was on an Ipi trial along with peptide vaccines in 2008 for stage 3 resected melanoma. Most of my side effects were mild and included mild rash that didn't itch, mild fatigue, assorted minor pains in the stomach area, a few hot flashes/ sweats. I think after the 3rd dose I had a major chest pain and I went to the ER. Prior before the 5th dose I had 2 weeks of severe headaches. An MRI revealed hypophysitis or swelling of the pituitary gland. I was put on a hormone replacement steroid in Oct. of 08 and I'm still on it today. The hypophysitis is one of the immune breakthrough events which correlates with better outcomes. My doc. reported that my immune response was at least 5 times over baseline, a response he sees in 10-20% of patients. I'd like to be able to taper off the steroid but have been unable to thus far.

 Best of success with whatever you decide and God bless,

 

 Jim M.

Stage 3C

Look at this trial if you only have one met. They will place the drug directly into the met.

http://www.clinicaltrials.gov/ct2/show/NCT00769704?term=Biovex&rank=1

 

I just finished Ipi and the only side effects were the ones I brought with me before taking Ipi.

Hi Everyone,

 

Thank you so much for your comments & suggestions

Well, I just found out that I will not qualify for BRAF trial because my 2 tumors in my thigh are too small: 4mm and 6mm so IPI is the only trial I can qualify for.

I already applied for the following clinical trials: Roche plx4032 randomized to DTIC and declined
because I had surgery to remove my 1.9 tumor (note: tumor was too painful & affecting my daily
activities). Oncovex randomized to GM-CSF and declined because I had recurrence while on GM-CSF
and applied for GSK MAGE3 vaccine trial but I was Mage3 NEGATIVE.

I spoke to 3 doctors is all 3 doctors says my melanoma is not aggressive & has not spread to
my organs so I can afford to waitand watch. However, the doctors also indicated that IPI would
be a "reasonable" treatment at this time.

So unless I get some courage to take the chance with IPI, it is probably stupid of me not to do
anything but "watch & wait". I am basically healthy & scared about the severe side effects with IPI
that could make matters worse. So far, my immune system is doing OK not spreading the melanoma.I
am worreid that IPI could mess up my immune system.

Any words of encouragement or stories Positive response with IPI,would be greatly appreicated.

Thanks for your repling to my post.

I have not heard of ipi trial users getting messed-up immune systems after the trial.  If this is what concerns you the most, why not post it as a separate question and see if any war stories emerge?  

I re-read your original post.  I don't think ipi encourages tumor growth.  It is long trial, with scans made at week 12, but a final determination as to whether or not your body is responding made from weeks 16-20.  Because of this lengthy period, some tumors grow or new ones are discovered.  For some people, melanoma is a fast-growing disease.   What often happens before shrinkage kicks in is a swelling of tumors, so they appear to grow.  This is a reaction to the immune response, and not a real growth.  Anyway, that is my understanding of what happens.

Why not ask your oncologist when you meet next week?